A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Thursday, February 9, 2017

Tippy toppy

On Monday night, small boy snuggled up next to me and asked, "what does it mean if the back of my head hurts and then I feel tippy toppy?"   When I asked him to tell me more he couldn't.

Wednesday night, when I was tucking him in bed, he clarified, "when I said I feel tippy toppy, I mean I feel like I'm floating away. "

"Did that happen to you again? "I asked.

"Yes when I was playing Wii."

"Was your babysitter with you? "

"No, I was at school. "

"You were playing Wii at school? "

"No, [ my babysitter ]  was with me when I was playing Wii. Not when it happened at school. "

"What do you do when it happens?"

"I just sit there. "

"What made you think of it just now? Is it happening now? "

"Yes, but my head didn't hurt."

I noted that his heart rate had flipped from the 80s to the 40s or 50s while we were sitting in bed.

I called the cardiologist at the hospital, who wasn't super concerned. The cardiologist indicated that it was probably either his heart rate readjusting as the amiodarone leaves his system or we might have him on too much blood pressure medication  now that his heart doesn't have to work as hard.

A few minutes later, I went back to his bedroom and his heart was doing a dance. 40 beats a minute, 80 bpm, bigeminy, 40 beats a minute.  And through it all, he was sleeping and breathing peacefully. I wish I wasn't able to hear his heart valve from across the room.

We have an appointment with the cardiologist who specializes in heart rhythms coming up on Valentine's Day. Hopefully we can figure this out then.   Until then, Cardiology does not seem to be concerned.

Their lack of concern is probably related to the fact that otherwise small boy is doing remarkably well:. Running around with friends, playing at recess, and having a great time.

Monday, January 30, 2017

Continuing to do well...

O boy is enjoying being back at school. Today is the first day that he went for the full day. Energy seemed fine, and he seemed engaged. A friend of his gave him a big hug at lunch and said she'd missed him so much. He got a silly grin on his face and turned bright red. I was amused!

Last Friday we took him in for an INR check - see how the blood thinners are working. We've been doing that at a local clinic, that isn't part of our insurance, that does it by finger stick instead of a full blood draw - don't need to torture him more than necessary! The result came back at 3.0, which is on the high end of the desired range. After some disagreement, the docs decided it was fine. We decided to feed him some kale (which we would've done anyway, but we did note the Vit K in kale limits the effectiveness of the blood thinners).

Next appt is Friday, we'll see what the doc says. We're supposed to decide the next phase of activity restrictions at the appointment, as the surgery recovery limitations will be going away, and we'll need to more thoroughly consider limitations (or lack thereof) due to blood thinners.

Tuesday, January 24, 2017

Back to School Today!

Today he went back to school for 2 hours to see how things would go - things seemed good. He wondered why he couldn't stay all day. I think we'll stay a little longer tomorrow (I'm staying at school with him for now to ensure things go okay). I had conversations with the district health coordinator, the school nurse, the principal, and the teacher. They want a note from the doctor to say he's okay to go back and detailing limitations...

Monday, January 23, 2017

Chill weekend

Lots of Netflix.
Walked to an open house around the corner.
He's frustrated at his activity restrictions and general deconditioning--but getting stronger every day.
Big sister had a nasty cold over the weekend and was quarantined in her room...but still managed to share with mama.

Friday, January 20, 2017

Follow up visit #1

Things are looking good. Small boy is recovering well at home.

1. Small boy's chest is healing well. He's now allowed to take a bath, reach above his head, and wipe his own behind.
2. Small boy's lungs are doing better. He's not breathing so rapidly and his chest x-ray looks clear.
3. Blood pressure is normal: 100/60
4. His liver has gotten smaller (now only 4 cm below his ribs), the level of liver proteins in his blood is normal, and his weight has been stable. In conjunction with his improved findings, this means he can stop taking his diuretic.
5. His heart rate is still fairly low for a kid his age, but it gets higher when he's active and he has no symptoms.
6. His INR  (used to measure how much his blood is being thinned) continues to be at the right level. This means he doesn't need to get another blood draw to check it for a whole week.
7. He can return to school for part of the day starting next week if he and Papa feel up to it.

Next appointment: two weeks.

Tuesday, January 17, 2017

Quiet day with papa

Mama's back at work.
INR testing done by finger prick as an outpatient.  We'll have to pay for it as we went out of network to avoid a venipuncture.  $59.00 per test.
Stayed awake till 8:15 tonight...not as tired as yesterday.
Down another .5 pounds.  Starting to look a bit skeletal.
Small boy pointed out today that his chest is healing in an unusual shape.

Monday, January 16, 2017

Fast asleep...

...in his own bed.

And I have been checking on him every 15 minutes....